October 28 2017

Viral & Bacterial

This is one of the first moments I have had to let my guard down, to let the silent whispers of my mind ring loud. Infusion days always offer trepidation and a sense of comfort, however odd that may be. These feelings are two sides of the same proverbial coin offering little and giving even less.
I worry. I hate that I worry.
I have been having difficulty swallowing. Nothing outlandish or extremely painful; no fever, chills, or a cough, just a pain when I sip water or attempt to eat. I mentioned it to Jon but I tried not to complain. It probably seems to him that I complain often but I try not to. There never seems to be a point–he can’t fix it or me, so why make us both suffer?
Regardless, I mentioned the pain to my nurses. I don’t exactly have a great track record for my complaints being taken seriously, but I felt like it was important enough to mention. My PA offered to look at my lymph nodes with a light after my drug drip. Her compliance was actually less comforting than I had hoped.
My hand breathes tangible life into the phrase “blind faith.” There is an un-feel-able vein in my hand that has offered IV passage for the past two years. Yet, for some reason (probably because I needed bloodwork) the nurse decided to avoid the golden spot (permanently marked by repeated IVs) and go for the visible and bright vein above. To my knowledge, the useable vain has only failed once–to human error, no less–but I digress. For the record, the big vein failed.
About an hour into a two-and-half- to three-hour treatment I got up to use the restroom. When I looked in the mirror, my eye was red–bright red. I remembered rubbing my eye but I didn’t think much of it at the time. Itchy eyes can be bad news bears during treatment. There is always a risk, an unspoken truth, that any infusion could be the last so I contacted the nurses. One nurse grabbed the PA and together they asked me questions. “Does it hurt to breathe,” do I itch… the questions you would expect to be asked during an allergic reaction. They ran my blood pressure and listened to me breathe. I had driven myself so they didn’t want to administer Benadryl right away. Instead, they turned off my drip and decided to wait a few minutes. My breath sounds were wheezy, but I assumed it was more to do with my lumped throat than anything else.
Fifteen minutes is a long time when you are thinking the worst. What happens now? Is this it? Did I really spend countless hours, pain, heartache, and years for this to be how it ends? What meds are still available and which one can I use after Remicade? Did I start with the medication that can move to any of the other biologicals or did I start with the wrong one? Like a clock hand, my mind spun and spun.
Thankfully, the rest period seemed to do wonders, and they were able to finish out treatment at a reduced drip rate. After the post-drip flush, one of the nurses walked me across the clinic to a patient room with a light and I felt something warm and sticky. It was an odd sensation; not unpleasant, just foreign. Blood. There was a certain beauty, I must admit, to the stark contrast as the bright red bloomed across my pale skin. My already anxious physique became even more so as the nurse helped me wash up. I noticed a mark, one perfect long scratch marring my unmarked arm. Looking more closely, I realized it was tracking along my vein. Thankfully, the mark seemed to ebb away just as quickly as it appeared.
After all of the excitement, the PA looked down my throat and, at my insistence, looked at my belly button. For a while now my belly button has been leaking. Sounds gross because it is gross. I mentioned it months ago to my GI doctor, but he either didn’t hear me or didn’t seem concerned.
I can’t take it anymore. Between the anal wound that won’t heal, the leaking belly button and everything else…I’m tired. I want answers. I want more than a pain prescription and a sympathetic look. I want control, I want my life back.
To avoid recapping the entirety of that experience, I’ll just relay the highlights. Basically, I need to pray for both a viral and a bacterial infection. Viral for my throat and Bacterial for my belly button.
Viral and bacterial, these are the best-case scenarios; the things I beseech.
There is a saying in Latin: “Aequam memento rubus in arduis servare mentem,” which translates to “remember when life’s path is steep to keep your mind even.” I allow myself to get bogged down with all of the things I cannot control, that I forget to breathe. I wear anxiety and fear like a pair of prized earrings. I allow them to hang from me, alter my appearance, and adorn my person. I would like to think I have gotten better, but if anything, I have gotten worse.
How does one go about keeping a level head, anyway?

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Posted October 28, 2017 by in category "Crohn's Disease


  1. By Invisibly Me (Post author) on

    You have been through so much, and are still going through hell – don’t be too hard on yourself, I think you’re managing to keep it together better than many could by the sounds of it. I will keep my fingers very much crossed for you, that the news is more positive soon, that things start to improve even if just in a small way. Not having control is incredibly hard (I’ve felt like this for quite some time now with poor health, my body not doing what it should, even decisions over surgeries out of my control because they’re not really options, just things that have to happen). I think that not wanting control would almost be a sign of giving up; you feel something (even if it is frustration!) and that is a good thing. Keep fighting. Keep holding on. I have hope. Things can and will change, things can get better. Sending hugs your way  ♥
    Caz x

    1. By omydaisy (Post author) on

      Invisibly me,
      Thank you for your comments and kind words. 🙂 I never thought of control that way, that letting go could be giving up. I guess I sometimes just want to take on the world, even if it’ll kill me. Anything to not feel bad about the Illness.

  2. By Desi Mazdur (Post author) on

    Hello can you check if you have an inflamed thyroid for the lump in the throat. I had a very painful lump and difficulty in swallowing for three months and I was put on steroids because of the inflamed thyroid. I’m reading through your blog. Offering words of comfort looks artificial to me. We all are suffering in one way or another. I would rather see if we can figure out some solution. I hope you have already looked at the information from listentoyourgut.com. That lady had Crohn’s and she says that she successfully cured herself after seven years of searching. She is from Canada. My best wishes to you.

    1. By omydaisy (Post author) on

      Thank you for the suggestion. I have not fully recovered yet, but I think it truly was viral. A few days after my appointment, I got the full swollen/sore throat, bed-ridden for days. I am finally on the mend with just a lingering cough.
      Thank you for the blog referral, I will take a look!

  3. By Sheryl Chan (Post author) on

    I’m so sorry to hear about this…I know the feeling of dragging on everyday with ailments and no answers. And I had a similar experience with infusions, although a different one for Lupus, except it turned into an anaphylaxis reaction. Not fun. Thanks for sharing that Latin quote too, am going to save it. In the meantime, hang in there. Looking forward to your next update!

  4. By omydaisy (Post author) on

    I have been obsessed with Latin lately. I think I might even attempt to teach myself. I am sorry to hear you have experienced similar, if not worse reactions. I recently connected with a friend that has Lupus. I admire you for your strength, you have to go through so much.


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